I have heard some of the heart-breaking stories about the way in which teens with endometriosis are treated, especially before diagnosis. Their lives are in turmoil and yet, they are not believed. Please parents and medical professionals, recognize that your daughters/patients are not making up their chronic pain. Listen to them. Thank you EA for making research-based materials available to teens around the world!

I have had the opportunity to write profiles of Association members/donors for the newsletter. So many are very creative and work so hard to raise money for and awareness of the association. It's as incredible as it is heartbreaking to hear about their struggles with this disease. It is even more heartbreaking to think that women around the world still suffer with endometriosis even as the association heads into it's 35th year of working for a cure. They were THE first to make this effort, and they will succeed because they will not give up!

The Endometriosis Association is an organization with the mission to education and support women with endometriosis. While this is critical, they have a huge push in endometriosis research. This translational research push is very encompassing - clinical, therapeutic trials, basic science research, educational research, and psycho-social research. Mary Lou is a great leader who knows the leaders in the field of endometriosis. The Endometriosis Association has been around for 35 years and is a credible resource for women!

As a policy, the Endometriosis Association does not give recommendations for physicians. They do recommend that women with endometriosis join the Endometriosis Association to participate in support and outreach activities with other women with endometriosis. To be clear, this organization is a support group that should work hand in hand with your doctor. If you are a woman with endometriosis, call them up and join so you can get involved!

When I was diagnosed with endometriosis, I was thrown into a whirlwind of trying to figure out what in the world I could do about it. I was SO grateful to learn about the Endometriosis Association and eagerly read their books, signed up as a member, read newsletters and joined a local support group. Their information is very up to date and you can just really tell that they are committed to helping women with this very challenging disease through research and education. I've learned that there are indeed many things we can do to help ourselves feel better by combining healthy lifestyle, conventional AND alternative treatments. Please keep up ALL the great work and let's all help them out!

I CALLED HERE ASKING SOMEONE TO HELP ME FIND A DOCTOR WHO KNOWS ABOUT ENDOMETRIOSIS. THEY SAID THEY CANT RECOMEND ANYBODY BUT IF I PAY $35 OR SOMETHING THEN THEY'D SELL ME A DOCTORS NAME. IS THIS EVEN LEGAL? I WASNT LOOKING FOR A HANDOUT, JUST SOMEONE WHO COULD SUGGEST A DOCTOR OR HOSPITAL. WHY SHOULD THAT COST MONEY?

ALSO, THE WEBSITE IS FROM THE 90'S. MOST OF IT IS ABOUT JOINING AND GIVING MONEY, NOT HELPING. IT SAYS FOR INFO, CONTACT MARY LU BALLWEG. I DID BUT I GUESS SHE DOESNT TALK TO PEOPLE WHO CALL. OR AT LEAST NOT TO ME.

I called this place for some guidance after being diagnosed with endo. I asked to speak to the President and was told flat out that she doesn't talk to people. How can the head of an organization not talk to the public? Not even by a scheduled request? When I ask what they actually do, they said support, research and education. I was looking for support and they did nothing.

I asked if they could suggest a doctor. They will only give you a doctors list if you pay $40 for a membership and then $5 more for a list. Really?? I got a free brochure, that was really dated. Now the only stuff I get from them is asking for money.

Did anyone else notice the other reviews are only by people associated with this place? I wish there was more reviews by normal people.

I first came across the Endometriosis Association when I was diagnosed (belatedly, as so often happens) with endometriosis. I became a member and received the newsletter and publications, and right away I was impressed by the combination of “heart” and science in the EA—the commitment to building a support community for women with this mysterious disease while serving as a catalyst for groundbreaking scientific research. I was even more impressed when the EA uncovered the link between endometriosis and environmental pollutants like dioxin, which helped the medical community to understand the misnamed “career woman’s disease” in a much broader way. The more I learned about the EA’s work—the collaborations between laypersons and doctors, the building of a global support community, the careful data gathering, and the independent fundraising for cutting-edge research--the more respect I had. In fact, I found the EA’s approach so remarkable that I wrote a sociological article about it and documented the organization’s history so that it could serve as a model for others. While doing this, I read many, many personal testimonies about the EA’s life-changing work. I’m now an advisor to the EA, and I strongly recommend the EA to anyone who wants the best information and support relating to endometriosis. The EA’s work has always been mostly membership-funded, and while it stretches every dollar to the maximum limit, it would certainly benefit from more funding. My personal experience and my research both tell me that becoming a member and making any donation will have a huge multiplier effect.

Ways to make it better...

If I had to make changes to this organization, I would...

find more funds and staffing to support its work

More feedback...

Will you volunteer or donate to this organization beyond what is required of advisors?

I learned about the Endometriosis Association after I was diagnosed with this disease. This organization helped me so much and I learned accurate information in helping me deal with this disease. Just having someone understand what I was going through was very encouraging to me. After reading the Endometriosis Sourcebook, learning information, changing my diet, and talking with other women, I felt better educated to deal with the medical problems I face associated with endometriosis. My husband and I have supported the Endometriosis Association for years and I encourage you to do as well. I recently became a board member and I am looking forward to educating and encouraging other women with endometriosis that need help as they deal with their diagnosis. I recommend you to look at the website at www.EndometriosisAssn.org or read the Endometriosis Sourcebook for more information.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

I remember when I was finally diagnosed with Endometriosis. I had so many questions, but no one seemed to have the answers. I remember sitting in the waiting room of the doctors office and I picked up this yellow brochure for the Endometriosis Association. Later that day, I contacted them. It was life changing for me. Not only did I have a wealth of information and knowledge at my finger tips, but there were people who truly understood what I was going through by having this disease. As a member of the EA, you have access to the best information out there! The books, newsletters, healthcare provider list, programs and the ground breaking research are what truly make the difference. I have personally been involved for the past 5 years by serving on the board and I have seen first hand just how much goes on each and every day. I would encourage you to get involved by becoming a member or a donor. www.endometriosisassn.org

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

As a disease, endometriosis is plagued by misinformation, taboo, and delayed diagnosis. There is no cure, the symtoms are often misunderstood, and many treatments have serious side effects. There are huge needs for patient advocacy and support to correct the multitudes of bad information out there, and the Endo Association fills that gap and more.
I first connected with the Endometriosis Association when I was diagnosed with the disease as a teenager and was spending most of my days in pain. I benefited from the Association's books and, as a member, I have learned a lot from their incredibly informative newsletters which also connected me to an international community of women with endo. The books are the BEST information out there on endo. After volunteering for EA, I recently joined the board and can say that, from the inside, the organization is even more impressive. EA is funding groundbreaking research, and has had its own groundbreaking discoveries, such as the first-time-ever research-proven link between dioxin and endo. Mary Lou Ballweg, the Executive Director, works tirelessly on behalf of women and girls with endo and in her time since founding the organization has producted amazing shifts in the way the disease is understood and treated. However, much more needs to be done! Get involved by joining as a member, reading a book by the Association, or being a donor: www.endometriosisassn.org.

The Great!

I've personally experienced the results of this organization in...

I am a member and benefit from their information-packed newsletters, book, and support system. It is worth it to become a member -- you get a ton of resources and feel connected to others and empowered by the information you have access to!

Ways to make it better...

If I had to make changes to this organization, I would...

Somehow make the funds flow more easily. Donate now - it will really make a huge difference! www.endometriosisassn.org